Personal Stories

T’s Story

This story is from an interview conducted by DWDV President, Hugh Sarjeant, with a gentleman whose name has been omitted by request for privacy purposes.

HS: I am speaking with with T, a gentleman who has a number of ailments, to talk about what his experience has been and how his life is progressing with these ailments. Thanks T, for agreeing to speak with me. First can you tell me how old you are?

T: I am 65 years old.

HS: Can you tell us a bit about the disease and ailments you have, what they are, how long you have had them and what sort of problems they give you?

T. About 35 years ago I had a scan on my neck, and in the process they found out I had MS. That was 35 years ago, and it only started affecting me 5 or 6 years ago. In that period 7 years ago, I got diagnosed with lung cancer and I have had the top right-hand lobe of my lung removed. I have had 3 surgeries for cancer for removal of pieces of my lung from the left- and right-hand sides. As far as actual cancer, it has not given me any physical problems. The biggest problem is more mental than physical. An offshoot of my MS is a problem called trigeminal neuralgia, for which I have had 3 brain surgeries for have to keep having to have surgery for that every 18 months. The pain is unbearable, and it puts me on my back and my biggest problem is the uncertainty of everything between scans. You must have scans every 3 months, every 6 months and you are just waiting, waiting for results and you can’t organize anything for the future because you don’t know what the future holds.

How I got introduced to DWDV was originally when I first found out I had cancer. I was a bit worried and wanted to get my act together and know what was going on. At that time Victoria didn’t have the legislation and I heard about Switzerland. So I chased up on as much as I could and then somehow or other I got Rodney’s number. Rodney helped me through it all and basically calmed me down and said to wait and see what would happen with the Victorian law – and now the law has changed.

HS: You mentioned scans. Are they for the pain? And you mentioned the other symptoms you have – what sort of treatments are you having, are you getting any drugs to provide you with relief?

T. The scans I have are for my cancer, every 3 months, and the other scans are for my brain. I had to have the surgery called microvascular decompression. They went into my brain, and they put something in between the brain and the nerve but that surgery didn’t work. I saw another neurologist and he said that sort of operation shouldn’t have been done. They did then what I think they called it a ‘balloon procedure’. When the balloon procedure was done the pain went straight away and that lasted about 12 months, until I had to have it done again.

In the meantime, I had begun taking medication for the pain. In the beginning 100mg of the tablet keeps the pain in order but it gets to the stage where I am taking 800mg of this medication. The specialist doesn’t want to see me until I am at this stage when I am taking this amount of Tegretol.

HS: That sounds a full coverage of where you are at. As you know we now have the legislation for Assisted Dying in Victoria. If that was available to you, do you think you would want to access it and have assisted dying provided for you?

T. Yes, I would. I just don’t want to suffer. I want to have the ability if I choose to go that way. I would like to have that law in order.

HS: Is this something you have thought about since you have had the illness or is it something you thought about before the illness?

T. Thirty-five years ago when the specialist told me I had MS, I went to the library. There were no computers then and I read as much as I could about the nastiness of M.S, so that put a seed in my head that I didn’t ever want to get to that stage. I know with M.S nothing can be done. I just want, when the time comes, to be able to access VAD and I want to be able to do it without any arguing.

HS: Lastly, if you were to go down that path, do you think you would have the support of family and friends?

T. Yes. I have 2 kids. They are in for it – they know exactly what is going on. I have got all the papers, everything is organized. I still don’t understand it enough but every time I hear something about VAD, I try to soak it up. When the time comes, and I need it then I will ask more questions and whatever.

HS: Is there anything else you would like to say?

T. Mentally this puts me on my bum. It is the mental drain waiting for results from scans and tests and this that and the other. Otherwise, it has been 7 years with cancer and 2 weeks ago, I got the word that the scans have come up all clear.

HS: Thank you so very much for that T.

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